In absentia

It’s a strange feeling. Sitting on the sofa, listening to 4 Non Blondes, drinking coffee, and realising I finally made it. Knowing it took what felt like forever to get here, and trying to accept that I now have my own life. My own rules. My own independence.

Neglecting my blog, and everyone involved… it hasn’t felt good. The occasional tinge of guilt sneaks up on me, knowing that so many people have supported me for over a year and are still commenting despite my absence. However, sitting in the front room and seeing my belongings mixed with S’s… I honestly never believed it would happen, and real life has to take precedence.

Yes, we moved in together. I escaped; and not only do I have freedom for the first time in years, but I also have access to my own finances for the first time in my entire life. I got the bus into town two days ago – a feat in itself, considering how long it’s been since I felt brave enough to use public transport – and checked my bank account. Seeing money in my account for the first time since receiving my stepfather’s inheritance… you don’t know how amazing it feels. Knowing that, for the first time in twenty seven years, I am entirely independent. For the first time, my life is my own and not controlled by anybody but myself.

The past couple of weeks have been an unbelievable nightmare, culminating in a full-force BPD freak-out where I cried, screamed, howled, and eventually called a taxi to take me to S’s. I couldn’t cope with anything at all, and I admit there were a couple of situations where it looked like I was going to lose it entirely. I hit myself in the face. Toyed with a razor and a pair of scissors. Pulled a chunk of hair out, just to feel anything but the horrible pain inside of total loss of control. Stopped eating entirely for a week, living on strong coffee and the last of my dope stash, codeine; anything I could get my hands on to numb the fear just for a short while.

In truth, I don’t know how I got through it all. Trying to explain just how wrong everything seemed to go…it’s impossible. You can’t put such things into words.

You see, it wasn’t just the move stressing me out – although it really didn’t help – and my habit of not being able to cope with more than one thing at once really didn’t help. Quite why I decided to stop taking my medication for a few days, I’m not sure… I should know better, and can only assume that BPD was telling me I’d be better off without them. It’s happened often in the past but I thought I was over it, and had more sense now. Obviously not.

Within two days I’d gone back to the old ways. Panic. Everything was a disaster. The world was ending. Paranoia, beyond belief. Constant – and I mean constant – tears. The need for reassurance. Grabbing onto anything to survive. Laying awake at night hearing the slight whisper of the voices creeping in. Shadows and movement just out of my vision. Feeling victimised by things which hadn’t even happened.

I don’t know how I used to live like that.

Along with everything else I was trying to deal with – the return of fibro pain from not taking Lyrica or Celebrex/Naproxen, the tendonitis getting much, much worse, my mother freaking out over every little thing connected to the move – I finally got to the Biomechanics appointment which had been moved around so many times; I thought I’d never get there. Waiting was pointless though, as nothing was achieved. In fact, I may as well have stayed at home and abandoned any hope of help.

After months of waiting, after being discharged from physio after nothing helped, all the appointment involved was being told I need to do exercises to help the pain in my ankle and foot. In other words, I waited months – and worried – simply to be told exactly what I was told at physio. Told exactly what I already knew. I tried explaining that I’d had to stop the exercises since they were so painful but was simply told to do them regardless. Then, I was referred back to physio.

What is it about me? Why does nobody take me seriously?

I pondered this for a while after the appointment. There’s no denying that I’ve been let down by the NHS a ridiculous number of times; pushed from pillar to post, sent from one specialist to another, and always been made to feel like more of a nuisance than a genuine patient.

So I sat, and thought, and came to perhaps a controversial conclusion; that my past history of mental illness is affecting my treatment. I know this sounds paranoid – and it’s understandable that perhaps the idea of doctors refusing to treat me due to mental illness is something many would pooh-pooh as ridiculous – but the more I thought about it, the more sense it made.

You see, I’ve never been able to shake the feeling that many see me as a faker. A chancer. Someone who goes to the doctors just to get attention and treatment I don’t need. Munchausen’s syndrome comes to mind.

It’s possible that some of my symptoms are psychosomatic; in fact, I know some are. Others however… you can’t fake them. It’s impossible to fake things like hair loss, swelling joints, jaundice, constant coldsores, endless urinary infections, weight loss, tendonitis, crunching knees and fingers, sciatica… all these things are real, physical symptoms, and have been proven to exist. So I can’t be faking it; doctors themselves have confirmed a myriad of symptoms and illnesses.

Yet… I’m not getting the treatment I’m entitled to.

Last week, I discovered something I’d never known, and it’s only served to confirm my suspicions. I spoke to my mother about accessing my medical records – she agrees that I’m not being treated fairly – and I found out that when I was seventeen, I was sectioned.

I never knew. Nobody told me. I assumed I was simply being ‘kept an eye on’ when I was stuck in hospital after a failed overdose, but in reality the truth was kept from me to protect me. I can understand why, but still… it’s a lot to come to terms with. I’ve always held onto the belief that no matter how crazy I’ve been, I’ve never been sectioned. Somehow that belief helped me cope. Now everything’s been turned upside down. A lot of my life has been a lie.

It’s a weird thought. I was sectioned, and never knew.

It makes me wonder what else I was never told. Just what my past involved. I know for a lot of my teens I was out of it, and couldn’t take much in except for the difficulties and problems I experienced, and I know I was often trapped in some form of psychosis; living my life in a bubble created to protect myself. There’s so much of my teens I can’t remember – medication, craziness, lack of sleep, lack of food, drugs, drink… it all blocked out memories – and it’s entirely possible that things happened I wasn’t aware of.

So much of my life has been pieced together from flashes of memory; some of which may not even be real. In truth, I don’t know half of what I’ve lived through. I just… locked it away somewhere.

They should have told me. I had a right to know.

Right now, I’m trying not to think about it too much. I have an appointment with my GP on the 9th, and I’m planning on talking about all my worries. I’m really not up to it right now – a lot needs to be done to the flat – but this needs to be sorted once and for all.

Related articles

• Is there anything I can do to help my ill friend? (ask.metafilter.com)
• Munchausen Syndrome (mademan.com)
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All I need’s to be with you.

I admit, the letter has been playing on my mind more often than I’d like it to. I promised myself I wouldn’t allow panic to creep in, and so far I’ve managed to hold it back quite well, but this morning I woke at 6am after a dream about O – my fifth in a row – and the silence in the house has made room for me to think. I hate thinking. Thinking nearly always leads to bad things.

I nearly didn’t post anything about the fraud officer visiting on Tuesday; I questioned if perhaps the whole privacy breach and subsequent passing around of my blog link could have something to do with the visit, and if so… should I speak about it on here? Could I inadvertently make things worse for myself? Then I realised that nothing I could say could change everything I’ve written in the past; I’ve documented the appointments and the pain and the medications. I’ve been brutally honest. I’ve expressed my hatred of claiming benefits. I’ve spoken about how I’ve tried to work, but have always had to leave voluntary jobs because of illness. So my blog isn’t exactly a hotbead of fraudulant activity.

Two things saved me from damaging myself this weekend. I wasn’t being dramatic in my last post; as I wrote, I was filled with sickness from panicking; that pre-panic attack bile rising into my throat and choking everything I try to say. As I typed, I was considering how easy it would be to dismantle a Venus Spa razor (in hindsight, it would have been impossible) and just how much food I could shovel into myself before I achieved carbohydrate calm. I just typed, and let it flow, and let the fear and anger out. Usually I censor myself a little – going back to correct mis-spellings and perhaps removing a few hundred swear words – but this time, I just wanted some sort of outlet. Some safety net which wasn’t harmful to me.

It didn’t work, but you know what did? The lovely, supportive comments which poured in. From those I’ve chatted with before, and from total strangers to my blog. Not a single cruel or judgemental thing was said. The advice calmed me. The kind words… well, I cried. I cried buckets. Even though I don’t know any of you, you still pulled around me and helped when I needed it. I don’t think replying to all the comments will achieve much – I’m trying to let it all go now and forget until tomorrow – but I do want to say, from the very bottom of my heart… thank you. When real life let me down, a group of almost-strangers (and total strangers) on the internet helped. Considering I’ve seen little kindness online… it means a lot. I hope everyone who commented knows that, and knows they helped.

The second thing to save me was S. On Saturday, my mother decided that she had to clean and tidy every inch of our house for the fraud officer. This is nothing new; I accept our house is a little… eccentric, perhaps. Books piled in corners. Books spilling off shelves. Books tied in bundles, waiting to go to charity. Books everywhere. However, I don’t see how tidying will help anything. Surely it’d give an unrealistic view of what our real lives are like? After all, the house is usually an ungodly mess. It’s not like we’re stockpiling dodgy porn or laundering money; we read a lot of books, and books take up space. It’s hardly a crime to love reading.

As a result, she expected me to help. Of course; I live here too. I did, however, feel slightly resentful that she’s the one freaking out willingly, when the appointment is concerning my benefits. I’m doing my best to stay calm, but watching her rush around, pulling chairs out and panicking over dirty dishes… it doesn’t help. I feel guilty. It’s my fault everything is such a mess;  I just can’t cope with the housework. I try – things have slipped since I’ve had ‘flu, but I do my best to keep my bedroom tidy and I sometimes offer to clean the bathroom – but I just can’t do it. The piles of books are heavy, and as soon as they’re cleared away, we get them out again anyway. Washing the dishes inevitably ends up in my mother informing me that I “can’t wash up properly” and she re-does the whole thing, so I gave up trying years ago.

I tidied away my underwear and informed my mother that, actually, I would really like to visit S because I hadn’t seen him at all last weekend and we hardly spent any real time together at Z’s party. Earlier, she’d said I needed to help her get the house sorted – an impossible task – so I’d lost all hope of seeing S until next weekend, but she surprised me by saying it was okay so long as I was back early on Sunday. I bit my tongue at the urge to shout, “I’M TWENTY-SEVEN YEARS OLD!” and accepted the rare gift.

S, as always, was wonderful. He knows I adore his white and lilac shirt, and he wore it for me. Gave me a big kiss – despite the coldsore – and a hug, and showed me all the ingredients he’d bought to cook me a roast dinner. I nearly cried at the kindness of it all. We sat in the garden and smoked while I told him my fears; that I’d lose my benefits – my only source of income – and would end up homeless, or I’ll be taken off incapacity and/or lose the high care component. That I’ll be forced to attend a jobcentre course to shoehorn me back into work. I’ve never worked; I can’t go back to something I never did, and what happens if an appointment with a specialist falls smack bang in the middle of the course? If you miss a day, you get all money stripped from you. I told him all this and tried not to cry – I’ve only cried in front of S twice: once when we were watching fireworks and they reminded me of my stepdad, and once when I was just tired and grumpy and needed a hug and some sympathy from somebody who wouldn’t judge me. I never set out to hide tears from S… I just don’t think they’d help when he’s so reliable with giving good advice and support.

As promised, S cooked me a roast. He’d bought me cheese and leek sausages, and made extra potatoes because I haven’t been eating properly for a couple of weeks. As he cooked, (I peeled the potatoes and crushed the garlic) we talked about the flat. The builders have started; the kitchen and bathroom need refitting, and after that it’ll need redecorating, so the plan is to move in around a month to two months. I can cope with that. At least now I have a realistic time frame to tell the benefits office I’ll be moving out of my mother’s house. I just hope it all works out. So much has gone wrong for me, and I’m almost scared to believe that perhaps – just maybe – something I long for will come true.

We spent the weekend playing Boggle and Worms: Armageddon. Bought a takeaway and watched 15 Storeys High on Sunday night. S kissed and held me and constantly made me pinch myself; how did I – a high-school dropout from a shitty seaside town – end up with such a perfect boyfriend?

We sat together on the field near his house – him lying on the ground with my cardigan under his head, me sitting up with my legs tucked around his – and I felt safe again.

I wish S was here now.

 

“…or does the mind control the body? I don’t know.”

Yesterday I woke up expecting to finally be over the ‘flu after a week of hacking, choking, snotting, complaining and feeling like my head is going to explode. I expected that even I – she of little immune system after taking steroids – would have shaken it off by now.

No. Of course I haven’t; that would be expecting too much. To add insult to injury, I developed a huge cold-sore on my lip, going down my chin and blistering like crazy. This morning (well, afternoon) I woke up, coughed for a while, realised I had no energy and sunk back into bed. A quick glance in the bathroom mirror confirmed that the cold-sore from hell has grown even more. I look like a mutant.

I’m frustrated. Today, a group of friends have gone to the beach to celebrate the solstice. We do it every year; party until the sun rises the next day. I missed the last party due to illness, and I’m missing this one too. It just doesn’t seem fair.

I sometimes wonder if I make things worse for myself; that perhaps I’m so used to feeling sick that I expect it, and maybe I pretend things are worse than they are. I’ve always wondered that. A lifetime of illness isn’t normal, after all. I was sick when I was born and, twenty-seven years later, I’m still sick. I’ve had ear infections. Urine infections. Infections in my cervix. Almost daily diarrhea since I was a child. I went into anaphylactic shock as a baby. My ovaries are covered in cysts and my cervix is full of scar tissue. They removed it, but it comes back. They give me antibiotics for pelvic inflammatory disease but they don’t work. My gallbladder got infected, and my bile duct was blocked; which caused pancreatitis. It took months to recover from having it removed, and again, I was left with scar tissue and a life-long need for strong anti-acids to cope with stomach acid going the wrong way because my bile duct was damaged.

I have a rare type of eczema on my hands and feet; one which can’t be treated by even the strongest steroid creams. I’ve always been prone to eczema breakouts, but this is something else; this breakout has lasted over a year. I’ve been given every cream available, and was turned down for expensive treatment so I’m left with no choice but to live with it. It burns; I need regular antibiotics to combat the infection which constantly breaks out in the cracks, and my skin is scarred from how deep the eczema goes. Most people with this type have it for life, with occasional remission.

At the present time, I am under the care of one of the top rheumatologists in the UK, along with the dermatology department, the bio-mechanics clinic and my own GP. I’m waiting to be referred to urology, and possibly back to gynecology. Sex has become incredibly painful and, afterwards, it burns for hours. The slightest pressure is causing my skin to tear, even on the outside.

Logic says I can’t be inventing any of this because my medical records are stuffed with consultant’s notes, diagnoses, test results, second opinions and operations. Each and every problem has been documented and proven to be real. Yet I still question myself.

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I’m no superwoman.

About the drugs – you’re playing with fire. Don’t get burned.

- comment from YAPCaB

I’ll never learn. I try to; for the last few years, I’ve tried so hard to fight my various demons – painkiller addiction, bulimia, binge-eating, self-harm – the urge to sink and slip away from a world which has always confused me so much. I’ve tried to better myself.

I’ve never been one for willpower; I just never seemed to grasp the concept behind it. Giving things up… I’ve always had such an addictive personality that the idea of stopping a behavior - damaging or not – has long been something I can’t comprehend. I always had huge amounts of respect for those who give up smoking or lose weight without resorting to extreme dieting and making themselves vomit, because it’s something I’ve never really been able to do. A couple of days, maybe… but then I always slip back into old crutches and coping mechanisms.

Then, something changed. I split up with J, and suddenly I wanted to leave all that behind. I was single for the first time since fifteen years old and I’d finally torn myself away from J’s abuse, finally started to understand why my relationship with O failed so epically. For the first time I truly looked at myself and my life, and I wanted to be different. I didn’t want to keep adding scars.

Last night, I realised why decisions made in haste are never the best idea. I thought I’d be okay taking just a couple of Tramacet, but didn’t figure on them reacting with the usual meds. I certainly didn’t expect to be vomiting uncontrollably into a cereal bowl at 3am, sweating through my pyjamas and hallucinating that the walls were moving. I lay in the dark, stinking of spew and chemicals, and wondered why it seemed like such a good idea at the time.

Yesterday, I was stressed for no reason. Sad with no clues as to why. I’d meant to go out for a walk around the embankment, but tiredness was pulling at me and I’ve picked up my mother’s virus; really not what I need right now. With the benefit of hindsight I know exactly why I wanted to block the day out with Tramacet; I was scared of being ill.

I’ve been chronically sick for such a long time that the idea of spending a week or so battling the virus which has  all but crippled my mother is something I just couldn’t cope with. I know it’s weak; it’s only a virus after all. I just didn’t want to think about how long it takes me to recover from any illness thanks to fibromyalgia. I can still be exhausted by a cold months later. I didn’t want more sickness.

Of course, I just brought sickness on myself. Now, I’m sitting here in my bedroom, tucked under my purple duvet and leaning against a v-shaped pillow, wondering why I feel so bad. After all, it’s not like I have the urge to take any more tramacet. It’s not a relapse if I can’t stomach the thought of vomiting up bitter pills again. I just feel like I’ve let myself down, I suppose.

I’m no superwoman. I’ve proved that throughout my life. I react badly to stress and take criticism far too personally. My self-worth depends on my physical appearance. I seek approval. Relationships have been destroyed by my need to know where somebody is at all times. I’ve controlled others. Used drugs to blank out pain. Put myself in situations where I know a man will abuse me, and allowed it to happen. I’ve been in psychiatric hospitals; was given anti-psychotics at fourteen years old. I’ve had child therapists and I dropped out of school when the bullying became too much to deal with. I’ve lied to convince others my life is better than the reality. I’ve cheated on tests and in relationships, and taken my life for granted every time I tried to end it with paracetamol overdoses.

I’m not perfect. I never claimed to be. However, I do want to better myself regardless of the various ways I’ve tried to destroy everything. In the past I’ve somehow always managed to bounce back from hitting rock bottom, and I hold onto that knowledge. Sometimes, it’s all that keeps me going.

I’m okay. I’m getting there. It’s just hard to always stay upright.

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In which I step outside my comfort zone, and enjoy it

Our kitchen is what you’d call a ‘galley’; if a galley could ever be so small that one person barely fits in it. On one wall is cabinets and a tall fridge and on the other are appliances, squashed together and sometimes inaccessible behind organic cleaning products and spare shopping bags. There’s little wallpaper – it was stripped off years ago and somehow never got finished – so the walls are mostly bare and nicotine-stained. The ceiling is yellow and the lino on the floor is slowly peeling up.

Because it’s so small, my family tend to take it in turns to use it; even making a simple cup of tea is a military operation if more than one person is standing near the kettle. Cups tend to build up in the drainer and teaspoons clutter up the sink.

Earlier, I was making a brew for my mother and I. She’s ill at the moment – I suspect a chest infection/bronchitis – so I’m trying to help a little around the house today. I feel guilty for not being able to help more, but I had a busy weekend (more about that later) and fibromyalgia has sapped all my energy. I’m not in pain, just exhausted. Like my body wants to fall on the floor and stay there.

My dad walked in as I was pouring the tea and trying to juggle making a sandwich while my brain feels like it’s stuffed with bubble wrap. As I said, the kitchen is small and as he squeezed past me, I couldn’t help but feel irritated; it’s a one-person kitchen, we’ve all agreed on that. I stood patiently while he fiddled with the back door a little before wandering back into the living room. Almost immediately I felt guilty; my dad’s well into his sixties, he’s not in great health because of his drinking, and we suspect he’s possibly suffering from some sort of dementia, probably brought on from years of downing spirits and cheap wine every night.

But then I thought, why should I feel guilty for getting irritated by him? After all, I’m the one who made the decision to distance myself from my father; I can’t go getting emotionally involved if I’m trying my best to ignore the man who made my mother’s life hell until she got up the guts to leave him after one too many drunken punches were thrown. He may have been fantastic in my childhood – my hero in fact – but I refuse to smile at a wife-beater. I just can’t allow myself to do it. I can’t be a hypocrite and loathe violence but chat to the man who pushed my mother down the stairs. The more I thought about it, the more irritated I got. My father never once visited me in hospital when I was seriously ill with acute cholecystitis and pancreatitis. He never spoke to me about my mental health; not when he was sober, anyway. He doesn’t even say hello when he comes to my mother’s house. He’ll grunt, or say thank you if I make him a cup of tea, but he doesn’t say hello.

I made him a cup of tea. Told him it was in the kitchen, and came upstairs.

After my GP appointment on Friday, I sat around for a while, smoking and watching E.R (obsession of the moment; I always have an obsession. Last time it was House. When I was younger, I played Age Of Empires for two years straight) and waiting for the next medical adventure; an appointment with the podiatrist who’s been checking up on the tendonitis for the past few months. It went as well as it could; I have more flexibility than last time, but it’s still swollen so I’m being referred to rheumetology again. Different doctor this time, but the same department. Sometimes I think my life runs in circles and I’ll never break free.

I don’t quite understand why they’ve passed me on to rheumetology; the podiatrist didn’t explain, or if he did I was too anxious of being in hospital to take any of his advice and feedback in. I can only assume he thinks there’s something wrong with the joints in my foot. Same old, same old.

My best friend, Z, was 24 years old on Sunday, and she invited S and I to a barbecue at her house on Saturday night. My initial reaction was the usual; I didn’t want to go. I didn’t want to speak to people I didn’t know – her friends, her family – and I was worried I’d get too stressed out and retreat to a quiet corner and become my usual reclusive self, ending up going home and failing at yet another social situation. However, this weekend I felt the fear and did it anyway – with S’s help – and not only went to the barbecue, but had a fantastic time. S and I even stayed over in the spare room, snuggled together under a bright yellow duvet and shielding our silent midnight sex with a spare curtain draped quickly over the bare rail.

.Z’s two-bedroom house is rented out by her boyfriend’s parents. When she told me she was moving in with Steve, I was jealous; the most I could hope for was a small flat or paying well over the odds for a tiny house in a dodgy area. They have a huge garden and enough room for their animals; a cat, a corn snake, two degu’s and whichever cat from next door wanders in. However, it soon became obvious that she and Steve were struggling to cope with running a household. The first time I visited, the living room was filled with boxes and half-empty cups and the carpet hadn’t been hoovered since they moved in weeks earlier. The kitchen was a death-trap, and the bathroom had no door. Steve and Z have a strange relationship. I’m sure they love each other, but they’re so different to S and I, and sometimes I can’t understand how they stay together. Z is incredibly clingy and possessive, and always demanding reassurance. She doesn’t always take her medication for bipolar and I’ve stood awkwardly on many an occasion while Z overreacts to something Steve says and starts asking if he wants to break up with her. It’s uncomfortable, and reminds me a little too much of myself.

I confess, I wasn’t at all prepared for Z’s birthday. I’ve been losing track of dates recently – I have no idea what today is – and I have a really difficult time remembering birthdays anyway. I try, but it just doesn’t happen. I still can’t remember my brother’s birthday after knowing him for 27 years. Numbers just stress me out too much. Typically I hadn’t remembered  to buy Z a present, so I had to do a mad dash around Tesco’s on Friday evening while S and I were shopping for pizza and Fosters, grabbing a baked eyeshadow set and a box of Thornton’s chocolates; hardly innovative, and entirely crap for a best-friend gift.

My friend G (we actually call him G as well, it’s not just a nickname) was invited too, and walked up to S’s house with his staffordshire bull terrier so we could get a taxi together. G never spends money unless forced and the only reason he gets away with it is because he’s so charming. I call him a friend, but I’m still not entirely sure what that words means; we speak, chat on Facebook, and he used to live with me when I was in a relationship with J, does that mean he’s my friend?

Sometimes I think I’ll never understand social interaction. It just doesn’t come naturally to me.

Z was quiet when we got to her house – I was worried she hadn’t taken her meds again – and she barely acknowledged our presents. I instantly started panicking; I know I’ve been an awful friend and isolated myself, but she can’t leave me. She can’t abandon me; losing people has happened too many times now for me to cope with. Z leaned into me and whispered, “I was going to call the whole thing off” then pulled me into the kitchen. As partygoers pushed past us, she told me somebody had hung themselves. She said who but I was too Lyrica-muddled and panicked to take it in. Somewhere in my head I was still stressing over her lack of reaction to my admittedly shitty present.

A couple of years ago, Z’s cousin hung himself. She took it very badly, and still gets tearful if his name is mentioned. She told me that knowing somebody else who’d commited suicide in that way brought it all back for her. Everything brings it back for her. I tried to hug Z, but she wouldn’t let me.

S was chatting with Steve and G, poking around the barbecue and trying to be all manly, so I went to talk to Z’s next door neighbour. Ann is in her fiftes and lives with five cats in a house filled with nick-nacks and photographs. She has severe osteoarthritis and can barely walk, and she’s awesome. We sat in her house and rolled a joint each, chatting about the painkilling benefits of weed and my mother. Nicely chilled and calmed, I went back to the party, bumping into my friend (again, friend…) Debbie. I’ve only met her once before – when I was ill in hospital – and although we’ve chatted a lot on Facebook, I’ve always made excuses not to meet up. I’m too nervous. Being thrown into the situation suited me much better; she hugged me and we chatted while I broke the Lyrica rule and drank cider and Fosters. I figured if I was going to be ill, I may as well go out in style.

A couple more joints later, I was feeling okay. Z had brightened up (although she was still somewhat aloof; understandable),  and watching S holding the corn snake and marvelling over the muscle structure cheered me up in a way only geeky boyfriends can. I started chatting to other guests – there were about ten in total – and actually mingled. I never mingle. I’m very anti-mingle.

The night was a success, and I’m glad I made the effort to socialise for once. We ate birthday cake and played with G’s staffie, throwing balls across the garden for him to catch. Cooked burgers and watched S pour a whole can of Fosters down himself; nobody’s let him live it down. As it went dark we set up a plastic table and some chairs around the back of Ann’s house and smoked blueberry and weed shisha, accompanied by hash brownies and Jägermeister shots. Played music on our phones and talked about everything and anything.

On Sunday, Z and I left the men to do some work in the garage and went to a local food festival. It was shutting down a little as we got there but we still had a good time; loads of free samples and I tried anything which had chilli involved. Afterwards Z bought me some chips and we walked back to her house. I confessed that I’d been feeling guilty over not seeing her often, and she said, “yeah, but it’s your mum, she’s too controlling“. True, and I decided not to mention the other reasons; fear, anxiety, paranoia. Thought I’d just pretend it was all my mother.

I’ve promised myself I’ll make more of an effort to socialise; I’ve realised that when I do, I enjoy myself. As long as I have a safety net of dope and somebody I know to look after me, I’m okay.

I’m not going to die.

 

Living with chronic pain – the reality.

Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body.

The name fibromyalgia comes from three Latin words:

• ‘fibro’ meaning fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones)
• ‘my’ meaning muscles
• ‘algia’ meaning pain

However, the pain of fibromyalgia does not just affect the muscles, ligaments and tendons, but is felt all over the body. It results in widespread pain and extreme tiredness. People with fibromyalgia may also have:

• difficulty sleeping
• headaches
• irritable bowel syndrome (IBS)
• muscle stiffness

- NHS Choices

I was diagnosed with fibromyalgia in 2006. Within a couple of years, I had gone from an active girl, going for eight-mile walks every day and swimming regularly, to someone who spent days in bed, taking a cocktail of painkillers and swapping my amazing shoe collection for a series of comfortable slip-ons and trainers. To someone who often couldn’t fasten their own bra or manage to sleep.

The problem with a fibromyalgia diagnosis is that, although it’s in the British Medical Journal and accepted as a viable diagnosis by medical professionals (after ruling out more serious conditions like MS), many people still refuse to accept that somebody can experience intense pain without an obvious, visible, medical cause. In people with fibro, the nerves overreact to pain and can’t distinguish between a small touch and a smack in the face, meaning that sometimes even placing your hand on their shoulder can cause the person intense pain, akin to the skin burning and muscles tearing.

Fibromyalgia is usually diagnosed by testing the patient for certain ‘pressure points’ around the body. These points are extremely tender, and touching them lightly causes pain in that area. However, the pain of fibro isn’t limited to those specific points; it’s just a diagnostic tool rheumatologists use.

My own diagnosis consisted of a long talk with Dr. B – the consultant who also diagnosed me with osteoarthritis a couple of months ago – about my mental health problems. At the time, I didn’t see how it was relevant; my pain was physical. I now realise that he was trying to rule out pains caused by depression; a common symptom.

Dr. B poked me in the back and thighs with his fingers, asking if it hurt. Every time it did I squeaked and shot across the room. We spoke about my history of gastric problems and the tiredness I’d been unable to shake since my teens. The lack of sleep and never feeling awake. The regular blinding headaches and the pains in my jaw and neck which sometimes hurt more than I could cope with. Written down, it doesn’t seem so bad; everyone gets tired, everyone has headaches. Everyone goes through periods of bad sleep. Strange pains with no explanation probably affect everyone at times. However, when you’re always tired, always in pain, always running to the toilet and laying wide awake for days at a time… fibromyalgia is relentless. You can improve at times, but it comes back. Fibro-flares can last a day or a year, and the gaps in between aren’t exactly a relief; the pain just lessens a bit. Everything’s still hurting.

Tiredness as a symptom is often looked down on by the layperson. It sounds quite flimsy; an easy excuse for being lazy. However, I have been tired for years. Unless you have a chronic condition which affects your sleep, you just can’t understand how constant fatigue can destroy a person. Suicide isn’t uncommon.

Society as a whole seems to view chronic pain with suspicion. Even in cases of serious – even terminal – conditions like MS. Pain doesn’t seem to be a good enough excuse for claiming disability or having a carer. Unless you’re in a wheelchair, you may as well be making everything up.

Having your symptoms played down (“it can’t be that bad”) or denied entirely (“I heard from my friend’s uncle’s cousin that fibromyalgia/arthritis can be cured by a juice diet”) wears you down. When you live with chronic pain of any sort, you learn very quickly what you can and can’t do, and what will or won’t help. You become an expert on the subject, and while advice may be well-meant, it really doesn’t help. Telling somebody they’ll ‘get over it’ is useless when most of these conditions are life-long or can last for years.

In my comments on my post about privacy I mentioned the attitudes of members of a forum I used to post on. I never hid the fact that I was classed as unfit to work; disabled, in the medical sense. I was open and honest about the benefits I received – I’m on DLA and incapacity – although I rarely mentioned fibromyalgia unless somebody else brought it up; I didn’t want to be defined by any conditions I have. I’d already had abuse thown at me when I admitted to suffering from depression, and I knew I couldn’t take insults and accusations from strangers when I was already struggling to accept my position in society.

When you can’t work, you feel useless. The issue of employment and benefits is a hot topic in the UK right now, and most newspapers seem to revel in accusing everyone without a job of being a scrounger. The unemployed and the unemployable are lumped together with no leeway for disability, no allowance for redundancy or personal issues. I try to avoid the news precisely because of this attitude, but it’s difficult to miss when huge headlines scream out from paper stands with a photograph of a man with a supposed bad back who’s been living  a secret life as a judo instructor while claiming disability benefits. These cheats are in the minority, but society sees these photos and assumes everyone with a bad back is jumping out of aeroplanes and partying.

I’d like to credit humankind with more intelligence and free-thought, but I can’t help wondering if the majority looks at individuals like me and judges me for not having a career. When so much of what a person does is related to what they do for a living, it can be hard admitting that not only do you not have a job, but you perhaps never will. Taxi drivers often assume I’ve been at work or am on a day off; I used to try to explain, but the majority stopped speaking when they learned I didn’t have a job of my own. Now, I just say “yeah, long day” and leave it at that, or say I’m jobseeking. I shouldn’t have to explain my situation to total strangers, yet it happens all too often. I’ve stopped chatting to others in the street because they inevitably ask what I ‘do’; somehow, I don’t think they’d appreciate me replying with, “lie in bed feeling sorry for myself, mostly”.

For the past year, I’ve been pretty much bed-bound during the week. Since starting on Lyrica, I’ve been able to sit up and move around the house more easily, but it’s sometimes still difficult to make it down the stairs when my legs feel like they’ve fallen off. Pins and needles is common; my right side often goes totally numb. You just can’t walk on a dead leg, as much as you want to.

My hands still tremble, although they’ve improved slightly due to medication. Dropping cups and bottles of milk is common, as is walking into stationary objects when my legs decide to go the opposite way without permission. My knees often lock while I’m walking down stairs, and I’ve fallen over more times than I’d care to remember over the past few months. I’ve damaged my elbow, twisted my ankles, banged my head and bent my fingers back. I pull doors into my own face because I can’t judge distance due to being distracted by the pain.

I can’t cross roads without help; I rarely go out on my own now because I can’t cope with struggling across a busy street into the path of incoming traffic. I can’t know if my knees are going to give in half way across. I find that using a walking stick (black, with coloured flowers) helps with crowds – people tend to move if you’re obviously struggling – but I still get jostled and pushed. Maybe it’s my age; you don’t see many 20-something’s walking around with a stick in this town. Especially not ones with 36 piercings and visible tattoos and bright hair. I occasionally wonder if I’m being assessed by strangers because I obviously cope with the pain of piercing needles but not with burning sensations running through my arms and shoulders.

I don’t cope. It hurts like hell, but it’s a pain I can control. When your body betrays you, you need to hold onto something you have power over. When the needle goes into my body, I choose where and when. I choose how much pain I’m likely to feel. Fibromyalgia and arthritis don’t give you that choice.

There seems to be an assumption that life on benefits is taking the easy option. I frequently hear tales of 40″ HD tv’s and cars galore; where do they think that amount of money comes from? From DLA and incapacity, I’m ‘earning’ close to minimum wage. My television (20″, not HD) was a gift from my parents. My iPod was a Christmas present. S bought my PS3. I don’t have a car – I can’t drive, what with being disabled – and holidays are rare. The only time I’ve been abroad is to Germany on a school trip.

I  lived with my mother for so long after splitting with J because I couldn’t afford to rent on my own; with S, we can split the cost. I still pay my mother rent; it’s not free.

I will never own a house unless I inherit one or come into money through the lottery. I have no credit rating, and will never be allowed a mortgage as long as I’m ill. I don’t get handouts; I get help towards extra costs my disability causes. Costs such as handfuls of medication – I don’t get free prescriptions or a reduction – and taxis because I can’t always walk to the bus stop. Aids like walking sticks and adapted kitchen  equipment so I can open jars and unscrew lids. Clothes without fiddly buttons and shoes with extra support. Costs for travel to hospital appointments; I often have to get a taxi 20 miles or more first thing in the morning to see specialists, which can cost over £50 there and back.

Although the people closest to me show understanding, strangers are often callous and cutting with their remarks.

“You’re what’s wrong with society” – like I asked for this.

“You go to the pub, so you can work” – On Fridays, I meet S at a pub near the hospital. He likes to drink a few pints at the end of the week after working in the lab for very little money or respect. Before Lyrica, I’d have a couple of pints with him; is that so wrong? I’ve spent the week being in pain, do I not deserve a chill-out with my boyfriend? Are the disabled not allowed to drink? I sit down, I don’t dance or do gymnastics.

“Pothead/druggie/addict” – I understand that some people are very anti-drugs, and have a preconception of those who take them. Those who smoke weed are seen as lazy drop-outs. Yet those who judge often have no problem with legal drugs such as paracetamol or codeine. Cannabis is a proven painkiller; the studies have been done, and I’m living proof that smoking a joint can calm muscle spasms and make everyday tasks easier. I’ve had addictions to painkillers – codeine, tramadol and morphine – and I feel far more stable and healthy for swapping those for cannabis. Codeine damaged my liver, tramadol damaged my mind, and morphine destroyed my whole life. Cannabis has brought me out of myself, soothed pain and calmed my panic attacks; so why is it so bad that I choose to smoke it? It’s my choice, and I could easily push my liver too far and die if I took all the painkillers I’d need to dull the pain. Instead, I just continue damaging my lungs -  I smoke anyway – and accept it as a side-effect of treatment. All medications have negative side-effects. I was taking 40 co-codamol pills a day; how can that  be better just because it’s legal?

“You look fine” – well, thanks I suppose. That’s because I cover my face in trowelled-on foundation and bronzing powder to hide the grey pallor of my skin. I make myself look as presentable as possible because what 20-something wants to look like a stooped lump of sweaty, pained lard? I style my hair because it looks nice when I do. There seems to be a belief that the disabled can’t possibly look healthy. We fake it, very well.

Chronic pain isn’t fun and it doesn’t make you rich. It’s not an excuse to avoid work. I would kill to have a job. As a child, I had dreams of growing up, having a career and being independent. I wanted to be a paleontologist or a secretary and day-dreamed about my office and taking money home. Life holds no guarantees though and, through no fault of my own, I ended up with arthritis and fibro, along with mental illness. I wouldn’t expect to ace a job interview anyway; what business will allow weeks off with no notice? Who would help me get out of chairs since I can’t stand for more than a few minutes? I’d need time off for tests and appointments, someone would have to help with lifting things. It’s just not practical and I’d cost the business money. I’d be a liability.

Some people do abuse the welfare system. I’m not in denial of that. However, far more receive it for genuine reasons and without it life wouldn’t be worth living. Without it, there’d be no medications. No rent. No food. No clothes. No quality of life at all.

Some seem to think that’s what we deserve for daring to be unwell.

 

Depression – why opening the curtains can cause more suffering, and other advice

I originally planned to reblog this post, but after typing out a long response, WordPress decided to keep my reblog in a never-ending publishing state, then eventually wiped the entire post.

Picture this. You’re trapped beneath a safety-blanket of duvets and pillows. The room is dark and silent. All you hear is your breathing; and sometimes you’re not quite sure if you’re really alive. It feels like you’re wrapped in a big, dark spider web; you know something bad is coming, but you don’t even want to struggle or escape. Days and nights pass in a blur of half-sleep and daydreams. Time ceases to mean anything. You can’t remember when you last brushed your teeth; and it doesn’t matter. There’s no reason to.

Suddenly, somebody comes stomping in, full of cheeriness and attempts to gee you up. They flounce over to the curtains and fling them open, pulling the nice, safe duvet from you and exposing you to the harsh, painful light. Your eyes sting. You haven’t seen real daylight in a while. You feel cold and naked; the act of stripping away a blanket is, to you, a cruel and unusual punishment. The whole world can see you now, and you’re scared.  Tired, anxious, weary and scared. You just want to be left alone.

This is why pointing out lovely weather is annoying and pointless.

Depression is a cruel illness. It strips you of your ability to care or relate to anything around you. It fills your mind with emptiness – a saying I never understood until I experienced chronic depression myself – and it’s all you can do to blink without giving up.

My mother has a habit of trying to force me outside, into the garden. When she thinks I’ve spent long enough hiding in my bedroom, she’ll waltz in (usually while I’m asleep), throw the curtains wide with as much clattering and muttering as possible, and proclaim that, “you’d feel much better if you got some sunshine!”.

I don’t doubt that weather has a huge impact on depression. I certainly feel much less able to cope in the winter; making excuses about the weather being too bad to leave the house or see friends. However, depression is a very complex illness, and you wouldn’t expect a bit of sun to magically fix a broken arm. It won’t cure depression either.

There is one aspect of depression I have never been able to manipulate or control via medication; the urge to shut myself away from the world. Friendships have fallen by the wayside because there’s only so  many times you can refuse an invitation before they stop asking. Being shut away is a natural response to being depressed; withdrawing from everything and everyone can sometimes feel like the only way to save yourself. Retreat to a place you feel comfortable and secure.

As well-meaning as it may be to try to force a depressive out of their comfort zone in an attempt to cure them, what you’re really doing is tearing the safety blanket away from a very vulnerable person. You may call it tough love, but to the person you’re trying to help, you’re being cruel and unreasonable. They already feel low enough without feeling their loved ones are turning against them as well.

Depression lies. When a friend offers you advice on ways to cope, sometimes the depressed brain will twist the words to sound like an accusation; particularly in cases of borderline personality disorder. I’ve been told that bipolar can feel the same. This imagined accusation sticks with the depressed person and, over time, morphs into a huge monster they can’t possibly hope to tackle.

Going outside has long been a big problem of mine. In the past four years (give or take a year) I’ve gone from somebody who goes on regular long walks and trips to town, to an almost-recluse, travelling by taxi so I don’t have to deal with the public and wearing nondescript clothes so as not to draw attention to myself. Part of  that is due to living with chronic pain, but I know depression is at the root of my reluctance to be seen in public.

You see, I worry that everybody knows my secret. That they can somehow tell from my face I’m “one of those crazy people”. I’ve sat in taxis, listening to the driver crack jokes about our local psychiatric unit, and prayed he wouldn’t look me in the eye and realise I’m totally incapable of existing without daily medication.

I accept that trying to help somebody with depression is like fighting a losing battle. The nature of depression is that it convinces the sufferer that getting well isn’t an option. The concept of recovery doesn’t even exist; depression hides it from you.

This is why sometimes the sufferer lashes out either verbally or physically when you try to help them. It’s why they may turn their back on you and not contact you for six months when you give out a few well-meaning hints. It’s not that they don’t appreciate the advice or care about you; it’s that they’re unable to feel those emotions properly. Depression has dampened everything down, placing the depressive in a near-soundproof room. They may be able to hear you, but their lack of reaction isn’t because they’re being spiteful and ignoring you; it’s due to depression smothering them with apathy.

It’s natural to want to help those who are suffering, and mental illnesses are no different. However, unless you’re a doctor you wouldn’t try to remove a tumour; in the same sense, unless you really know what you’re talking about, offering advice to somebody entrenched in misery probably won’t work.

I’m not saying to abandon those who have depression. Far from it; there are other ways to help than mentioning medications and therapies you’ve heard about.

So, how do you help someone with depression? I don’t have the answers to that. Everyone is different, and depression is a wide-ranging illness often encompassing other diagnoses such as psychosis, paranoia, anxiety disorder, BPD, PTSD and bipolar. What works for one person might not work for another. However, along with not  wantonly opening curtains, there are some things which might help.

• The urge to drag a depressive out of bed is probably huge. However, it’s rarely the answer. When somebody retreats it’s through a need to be alone;  whether rational or not. In the depths of a depressive episode, you shrink into yourself and ignore phone calls. Emails go unanswered. Often, the sheer stress of having to communicate wears the sufferer down so much that they retreat entirely. Obviously if you’re concerned for their safety this advice doesn’t apply; but as long as they’re not hurting themselves… sometimes they just need to get through it on their own. Keep an eye on them; don’t let them be entirely alone, but don’t pressure them either. It can be a long process to climb out of the hole.

• It’s hard to help someone when they throw accusations in your face. Paranoia often tags along with depression, and it’s very easy to become convinced that those trying to help you are actually out to damage you somehow. My personal experience of it is that it’s almost a form of psychosis; suddenly everything and everyone are against you, and even the people who claim to love you seem to be trying to ruin everything. It’s not something you can just get control over. It’s easy to imagine enemies everywhere when you feel entirely stripped bare.

• I shouldn’t have to say this, but having depression doesn’t make you stupid or lazy. Sadly, these views still exist. Telling somebody to “just get out of bed and join the real world” isn’t the answer; it just serves to  make the sufferer feel even less of a person than they already do. Ask someone experiencing a depressive episode if they feel like a valuable member of society; they don’t. They’re at the lowest point it’s possible to reach, and suggesting in a roundabout  way that they’re taking up space and being lazy isn’t what we need to hear.

• On a similar note, saying “my auntie was depressed for a week and she did more exercise and it went away” doesn’t help. It’s condescending and patronising. We know our illness; we live with it every day.

• Telling somebody on anti-depressants that you don’t believe they’re safe or work properly will get you nowhere. Those with depression need support every step of the way, not putting down for their choices. Often, deciding to take medication is the last straw of a very painful life. It can be incredibly difficult to get up enough courage to go to the doctor and explain your failings so you can be given happy pills. If they work for somebody, what’s the problem?

• You don’t know how they feel. Even if you have depression yourself, you can’t see or feel their exact emotions; or lack of. When  you’re trapped in the depression bubble, nobody has ever felt as wretched as you do. That feeling isn’t from an excess of ego; you really do feel like nobody could ever withstand the pain and emptiness. Tell them if you empathise or relate – communicating with other sufferers can help enormously – but don’t try to convince them you know how terrible everything is.

• Invite your depressed friends and family to parties, but don’t be surprised or disappointed if they decline. It’s not because they don’t want to see you; it’s because they don’t want to see anybody. Telling them they’d “feel better if they had a few drinks” may be well-meant, but it won’t help. They won’t feel better. They’re sick, and sickness can’t be cured by a bit of fun. Let them know you’d like them to be there but that there’s no pressure. Pressure to socialise is a very painful part of depression.

• Don’t tell them they look tired. Seriously. Nobody needs to hear that.

Related articles

• Find Ways To Beat Depression (sympathygiftsformen.wordpress.com)
• The to-do-list (tadashidaiba.wordpress.com)
• Ideas And Stragaties For Coping With Chronic Depression (sympathygiftsformen.wordpress.com)
• Solid Advice To Effectively Manage Your Depression (sympathygiftsformen.wordpress.com)
• Confessions of a Major Depressive – Hope Through Depression Part 1 (michelewhitney.wordpress.com)
• Get The Depression That You Need Right Here (sympathygiftsformen.wordpress.com)
• Dealing with Depression (gouldiegirl.wordpress.com)
• The Darkness of Depression (johnager.co.uk)
• Depression versus laziness (mentalillnessupportnetwork.wordpress.com)
• Worst things to say to someone who’s depressed

 

Breakfast

 

If we treated all illnesses the way we treat mental illness

 

Moving forwards

I’ve been on Lyrica and Celebrex for three days now, and I think the Lyrica started working today. I noticed I don’t have any muscle spasms – for the first time in months – and apart from a day of dizziness (similar to being high as a kite; quite a good feeling) I’ve had no side-effects. I’ve always reacted quickly to drugs, so it’s entirely possible it’s starting to work. The lack of twitches and jerks is noticeable, and for the first time in ages I had a calm, restful sleep last night.

Celebrex is working wonderfully this time. It didn’t seem to make a difference when I was first given it for neck pain a couple of years ago, but it’s taken a lot of my ankle swelling down, and my fingers don’t seem anywhere near as painful. I didn’t even have backache when I woke up yesterday.

S has been ill with a virus and we’ve spent the weekend in bed together, watching trashy televison. Programmes about Australian customs and British police shows; the sort of stuff I never normally watch, but which seems perfect when it’s a quiet weekend with little to do but listen to S cough and fight off infection. He’s worried I’ll catch it – I catch every illness going – but so far I seem okay, and I figure it’ll be worth it after getting to spend the weekend cuddled up with nobody to bother or disturb us.

S and I… we’ve been together for fifteen months, and things couldn’t be more perfect. In fact, it’s looking like we may still find somewhere to live; a friend of his lost his grandad a few months ago and his grandmother can’t cope on her own anymore, so the family have found her a nursing home. There’s a chance we may be able to rent her flat, from his friend’s mother. It’s a lovely place; in a huge, tall building in quite a well-to-do area outside the town centre. If we do get it, the kitchen and bathroom will probably be refitted and the flat will be redecorated; so it will be like moving into a new place rather than the quite old-fashioned home it is now. There’s no garden, but there’s a small patch of grass out front and a personal stairway outside which has a canopy, and it’s only half an hour’s walk to the park. Fingers crossed.

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